Will it ever end...
Donation protected
Jenn and I have been best friends for over 15 years. We've been through a lot, but no matter what we are always here for each other. Jenn is the most caring, loving, strong, passionate person I have ever met. Last month, Jenn was diagnosed with a life threatening brain tumor, that is fast rapid growing and needs it removed with 6 weeks. Through this whole process she has tried to remain positive, but as her best friend I personally know she is hurting inside. Right now she needs everyone by her side. She would never ask for help but I am here for her. I know that she will kill me but this is what best friends are for, right? Below is a just "little" of what she has been through. I know that Jenn has helped a lot of friends and family over the years constantly putting others before herself and now I'm asking for all of you to show her just how much she is loved, valued and appreciated for who she has and will always be. She is going to need help with all the medical expenses that insurance won't cover, hearing aids for both ears ( which are going to be about $4,500 insurance doesn't cover it) and help with daily expenses because she won't be able to work with continuing to do everything herself, she will have to pay people to do it for her. Let's open our pockets and show Jenn the love we have for her so she can focus on her health right now beating this brain tumor with minimal complications as possible and a stress free recovery.
Then there's Jon Keller, who is the sweetest, most generous out going guy I ever met. He is Jenn best friend in Florida, He reached out to me to see what both can do for her. So we both sit here writing this together reaching out to all of you for help!!!
Here is a small glimpse of what she's been through so far, I'm pretty sure she's over 30 surgeries in just her 35 years. At 8 years old she was diagnosed with a lymphangioma tumor wrapped around her right optic nerve the size of a golf ball. She had it removed when she was 9 at Mayo Clinic in MN, the only hospital that would even preform the surgery. Unfortunately it regrew multiple times and continues to grow slowly so she had it removed when she was 12 and again when she was 19 years old. I remember her losing her vision was incredibly hard on her and still is a struggle. Learning to adjust to life again she constantly fell, continues to run into things to this day that she can't see, struggles with simple tasks like pour a drink or the anxiety of having to shake someones hand in risk she might miss their hand completely. Always so embarrassed of her struggles.
At 19 years old they hit the optic nerve. So she lost her vision, her eye died, went crossed and was/still is constantly dry in her right eye. I remember her saying “I refuse to be fat and blind” therefor starting her weight loss journey where she lost over 100 pounds. This woman has a drive like no other. After multiple surgeries and by multiple I mean like at least 5 of trying to fix it and pain medicine she couldn’t tolerate or have a decent life with she was forced to have the right eye removed when she was about 23. Again there were complications with that option and it left her in pain constantly and going through artificial eyes not ever finding a good fit to this day. They tried replacing her implant with a fat graph years later which I was there for (talk about a terrible day) but it’s caused so many more unexpected issues and at least another 8-10 surgeries rather than relief. Last surgery was done just last September in Chicago. I’ve been to Mayo Clinic with her I’ve been to almost every single operation in Chicago. It’s scary what she’s been through and watching how she suffers after every procedure yet she always keeps a smile on her face and tries to hide her pain. She travels to have all of her procedures done by the best of the best and it’s still not enough to keep her out of pain or fixed. She is a rare case, but thats maybe why she's so strong.
She always keeps going even through all of her challenges. In 2012 she started her own business Above the Grain in hopes to help others attain the weight loss and lifestyle change she has found regardless of her thyroid disease. She has managed to keep Above the Grain open through all of these operations and health struggles. No idea how but she always puts her clients first.
Jenn was rear ended in 2016 and lost her ability to do the work herself because she had to have multiple surgeries on her wrists. Now both wrists have metal plates to keep them working and 6 incisions on each wrist. That hasn’t helped much and the dr can't find another solution so every three months she has to get 2 cortisone shots in each wrist. Her next appointment I believe is in March. Even with this it doesn’t allow her to do her work all by herself because of the location of her injury and the way she has to carry pots and pans etc.
Lets get to the main reason for this go fund me. Last summer Jenn felt like something was off with her hearing when she was having jaw pain and only in her right ear. She said everyone sounded distorted like a cartoon. She went to the urgent care and they referred her to the ent doctor. The ent noticed her hearing had dramatically decreased in both ears but injected the right ear drum with with steroids three times. I can’t imagine how painful that was. Still no improvement so he suggested her get hearing aids but she felt like it was more than that and asked for an mri considering her eye tumor. The dr told her, "Well if you want to pay for it then I’ll write it up for you." And that’s how they found her brain tumor called an acoustic neuroma. She recently posted on Facebook the following....
“Ok long post but it’s getting around so I feel like it’s better I just put it on here rather than individually update everyone. I’m so grateful to have so many people that love me enough to constantly check on me. Please don’t stop doing that, it helps me get through my days.
I’ve been diagnosed with a life threatening rapid growing brain tumor called an acoustic neuroma. I found out because I started to lose hearing in both of my ears over the years but suddenly last summer my right ear was way worse and everything sounded distorted. I’ve seen a few highly recommended surgeons over Florida and I’ve decided on the team at Tampa General. They offered me radiation or three different surgical approaches in which I selected surgery just to have it hopefully done and over with.
I’m a little more comfortable with my decision on which procedure I’m having but I’m waiting to hear from my team Mayo in MN from my eye surgeries to see if they agree. Next step is to meet my neurosurgeon next week. I had a cat scan done Tuesday and it turns out I have an airy head which isn’t good due to spinal fluid leaks but good for room to see my tumor better but he’s confident that with how my bones are structured he won’t even need to go into that area so I should be fine on that.
He said no matter what I will lose my balance nerve they have to cut it off and they can’t reattach it and it still work like the optic nerve and that’s the same with each surgical option. Losing my facial nerve and hearing nerve are also risks but he’s hoping for the best with this surgical approach. I’m not going to lie I’m honestly terrified and sick to my stomach all day everyday trying to figure out how I will make this work and get back to a normal life without losing what I have built.
Since they will be cutting the balance nerve he said walking again is mostly mind over matter. In the first 2 days through 3 weeks-3 months I have to move my head, try to walk a lot and use my brain as much as I can stand it without puking too much so my brain reworks itself to know it’s ok to let the left side of my brain or nerve do all the work. Kinda like my eye surgery, I had to reteach my body to work without my vision or depth perception which he said it looks like I obviously have struggles (bruises everywhere) but not noticeable to most people. So I’ll be scheduling the surgery that I linked below for probably late March or early April after my birthday.
I will do my best to keep up with responding to everyone and I appreciate your love and support".
This is the surgery they will be preforming on her.
So you can see, Jenn has been through a lot. She is hurting but won't let anyone see it. Let's all pull together and show her how much we love her.
Much Love,
Lori Amling and Jon Keller
Then there's Jon Keller, who is the sweetest, most generous out going guy I ever met. He is Jenn best friend in Florida, He reached out to me to see what both can do for her. So we both sit here writing this together reaching out to all of you for help!!!
Here is a small glimpse of what she's been through so far, I'm pretty sure she's over 30 surgeries in just her 35 years. At 8 years old she was diagnosed with a lymphangioma tumor wrapped around her right optic nerve the size of a golf ball. She had it removed when she was 9 at Mayo Clinic in MN, the only hospital that would even preform the surgery. Unfortunately it regrew multiple times and continues to grow slowly so she had it removed when she was 12 and again when she was 19 years old. I remember her losing her vision was incredibly hard on her and still is a struggle. Learning to adjust to life again she constantly fell, continues to run into things to this day that she can't see, struggles with simple tasks like pour a drink or the anxiety of having to shake someones hand in risk she might miss their hand completely. Always so embarrassed of her struggles.
At 19 years old they hit the optic nerve. So she lost her vision, her eye died, went crossed and was/still is constantly dry in her right eye. I remember her saying “I refuse to be fat and blind” therefor starting her weight loss journey where she lost over 100 pounds. This woman has a drive like no other. After multiple surgeries and by multiple I mean like at least 5 of trying to fix it and pain medicine she couldn’t tolerate or have a decent life with she was forced to have the right eye removed when she was about 23. Again there were complications with that option and it left her in pain constantly and going through artificial eyes not ever finding a good fit to this day. They tried replacing her implant with a fat graph years later which I was there for (talk about a terrible day) but it’s caused so many more unexpected issues and at least another 8-10 surgeries rather than relief. Last surgery was done just last September in Chicago. I’ve been to Mayo Clinic with her I’ve been to almost every single operation in Chicago. It’s scary what she’s been through and watching how she suffers after every procedure yet she always keeps a smile on her face and tries to hide her pain. She travels to have all of her procedures done by the best of the best and it’s still not enough to keep her out of pain or fixed. She is a rare case, but thats maybe why she's so strong.
She always keeps going even through all of her challenges. In 2012 she started her own business Above the Grain in hopes to help others attain the weight loss and lifestyle change she has found regardless of her thyroid disease. She has managed to keep Above the Grain open through all of these operations and health struggles. No idea how but she always puts her clients first.
Jenn was rear ended in 2016 and lost her ability to do the work herself because she had to have multiple surgeries on her wrists. Now both wrists have metal plates to keep them working and 6 incisions on each wrist. That hasn’t helped much and the dr can't find another solution so every three months she has to get 2 cortisone shots in each wrist. Her next appointment I believe is in March. Even with this it doesn’t allow her to do her work all by herself because of the location of her injury and the way she has to carry pots and pans etc.
Lets get to the main reason for this go fund me. Last summer Jenn felt like something was off with her hearing when she was having jaw pain and only in her right ear. She said everyone sounded distorted like a cartoon. She went to the urgent care and they referred her to the ent doctor. The ent noticed her hearing had dramatically decreased in both ears but injected the right ear drum with with steroids three times. I can’t imagine how painful that was. Still no improvement so he suggested her get hearing aids but she felt like it was more than that and asked for an mri considering her eye tumor. The dr told her, "Well if you want to pay for it then I’ll write it up for you." And that’s how they found her brain tumor called an acoustic neuroma. She recently posted on Facebook the following....
“Ok long post but it’s getting around so I feel like it’s better I just put it on here rather than individually update everyone. I’m so grateful to have so many people that love me enough to constantly check on me. Please don’t stop doing that, it helps me get through my days.
I’ve been diagnosed with a life threatening rapid growing brain tumor called an acoustic neuroma. I found out because I started to lose hearing in both of my ears over the years but suddenly last summer my right ear was way worse and everything sounded distorted. I’ve seen a few highly recommended surgeons over Florida and I’ve decided on the team at Tampa General. They offered me radiation or three different surgical approaches in which I selected surgery just to have it hopefully done and over with.
I’m a little more comfortable with my decision on which procedure I’m having but I’m waiting to hear from my team Mayo in MN from my eye surgeries to see if they agree. Next step is to meet my neurosurgeon next week. I had a cat scan done Tuesday and it turns out I have an airy head which isn’t good due to spinal fluid leaks but good for room to see my tumor better but he’s confident that with how my bones are structured he won’t even need to go into that area so I should be fine on that.
He said no matter what I will lose my balance nerve they have to cut it off and they can’t reattach it and it still work like the optic nerve and that’s the same with each surgical option. Losing my facial nerve and hearing nerve are also risks but he’s hoping for the best with this surgical approach. I’m not going to lie I’m honestly terrified and sick to my stomach all day everyday trying to figure out how I will make this work and get back to a normal life without losing what I have built.
Since they will be cutting the balance nerve he said walking again is mostly mind over matter. In the first 2 days through 3 weeks-3 months I have to move my head, try to walk a lot and use my brain as much as I can stand it without puking too much so my brain reworks itself to know it’s ok to let the left side of my brain or nerve do all the work. Kinda like my eye surgery, I had to reteach my body to work without my vision or depth perception which he said it looks like I obviously have struggles (bruises everywhere) but not noticeable to most people. So I’ll be scheduling the surgery that I linked below for probably late March or early April after my birthday.
I will do my best to keep up with responding to everyone and I appreciate your love and support".
This is the surgery they will be preforming on her.
So you can see, Jenn has been through a lot. She is hurting but won't let anyone see it. Let's all pull together and show her how much we love her.
Much Love,
Lori Amling and Jon Keller
Organizer and beneficiary
Lori Amling
Organizer
Buffalo Grove, IL
Jennifer Burns
Beneficiary